07 May 2015

Ichthyosis Awareness Month - Merritt's story: "It’s nice to get compliments, but it’s also surreal. I mean where do I fit in?"

Merritt is someone I look up to. She's a bit older than me, and she's trailblazed treatments for her beauty regime, and mentored others younger than her. One thing I am in awe about is that she's worked as a Disney animator! So cool :)

Merritt writes about her path to finding a regime that makes her comfortable, and also one of the drawbacks of having flawless skin as an Ichthyosis patient. I really admire how she's addressed the issue of the high expectations of her having skin that's not typical of a person with Ichthyosis. She has Lamellar Ichthyosis.

Meet Merritt.

"It’s Ichthyosis Awareness Month, and I was asked to write my story.

I was born with Lamellar Ichthyosis, and I still have it. It’s a part of me, a part of my history. There’s no cure. No way for me to completely feel “normal”, even though to most, I appear to be.

I was born in Maryland, to two of the most amazing parents, Joe and Marjorie. My cousin told me that I looked like a glazed donut when I was a newborn, I was covered with a thin layer of shiny skin. I was officially diagnosed when I was a year old, after a core of skin was removed from my back. No one in my family had Ichthyosis until my brother, Joe Jr. was born 2 and a half years later.

Lamellar Ichthyosis is characterized by broad, dark plate-like scales separated by deep cracks. My skin was constantly dry, flaky, itchy and on many occasions would crack and bleed. Thick scales can block pores making it difficult to sweat, putting us at risk of overheating. Joe and I were never able to sweat in our younger years, so we had to limit our outdoor activity during the summer or in school in case we passed out due to heat exhaustion.

My mother tried every “cure” out there to keep us comfortable. When I was 4, on the recommendation from a friend, Mom coated me with a sticky ointment and began wrapping me in Saran Wrap. She recalled that I looked up at her and asked, “Why Mommy?” Holding back tears she replied, “I don’t know, honey, but it’s not necessary.” She removed the wrap never to put me through that again.

In 1977, Joe and I went to Temple Skin and Cancer Hospital and had 12 circles drawn on our torsos to which my mother applied 12 different lotions to see what worked best. What seemed to show improvement on my brother did not work for me and vice-versa. The lotions that worked great on both of us smelled so bad if applied all over, no one would want to be around us. If a lotion burned, Mom would blow on our skin until it cooled. We settled on Lubriderm unscented (that my brother still uses) and Retin A.

The dry, flaky appearance of Lamellar Ichthyosis made us prone to the ignorance of society. I had a darker complexion than my brother, so my skin looked worse. I did my best to fit in by hiding my condition under long sleeves and turtlenecks, even when the weather was warm. Many strangers, old and young, and school bullied ridiculed, stared at and ostracized me. I got called every reptilian name out there, mostly “alligator”, or “crud-neck”, “scabies”, “leper”, “flaky”, etc. People even thought I was contagious or dirty because of the dark patches of skin, and would be afraid to touch me or come near me. Often I would get scolded for staying out too long in the sun, thinking that I was severely sunburned. Others asked if I was burned in a fire. My mom would tell us that the people teasing us had low self esteem and picked on us to make themselves feel better. I expected it from children, but when adults, or even my peers would make rude marks, it really hit hard. As I got older, I would get clever with my responses. If someone asked, “What’s that on your neck?” I would respond “OH MY GOSH, IT’S MY HEAD!” If they stared for too long, I’d retaliate by staring back even harder and longer.

When I looked in the mirror, I didn’t see my dry skin. I saw “me”. I didn’t feel different until someone pointed it out to me in a cruel and intentional way, then it would take days to feel human again, instead of a freak of nature. I tried to ignore it for a while, but as many of us know, words and actions leave emotional scars that take a lifetime to fully heal. Mom was strong and comforted us when the insults made us cry, but then she’d go behind closed doors and sob. She later revealed that she would ask God to take it from us and give it to her. I suppose all parents want their kids to enjoy an easy life.

Mom also instilled in us a sense that we were made this way for a purpose. There was a reason God made us unique. I wouldn’t find out until I was 30 what that reason was, but she always reminded us that we were blessed. We weren’t born blind or deaf, we could walk, talk and had full function of our minds and bodies. All we had was dry skin, nothing else. I learned compassion towards others with disabilities because I knew what it was like to be different.

When I was in 9th grade, my dermatologist prescribed LacHydrin 12% to use on my face and neck and the results were incredible. My face became smoother and I didn’t have to hide my neck under turtlenecks as much. The lotion was too greasy and expensive to use all over, but from the neck up, I looked normal.

I spent a lot of my childhood playing by myself, not that I didn’t have wonderfully amazing friends, but when they weren’t around I loved to draw. I knew at the age of seven that I wanted to be a Disney animator someday. I drew a lot and used my talent to get the admiration from people that I couldn’t get in the physical sense. That love of art led me to Ringling School of Art and Design in Sarasota, FL, and finally an internship and full time job at Walt Disney Feature Animation in Orlando, FL where I worked for 11 years on The Lion King, Pocahontas, Mulan, Tarzan, Lilo and Stitch, Brother Bear, The Princess and The Frog, and eventually Curious George for Universal.

When I first moved to Florida, I was concerned about how my skin would react to the hot climate, but the heat and high humidity helped keep my skin moisturized. Right before I moved, my dermatologist told me about Aqua Glycolic Hand and Body Lotion. I could use it all over because it wasn’t greasy and it soaked in fast. It burned a little at first, but within a month my body was no longer flaky, but would peel like a sunburn and stay smoother for longer periods of time. And dare I say, I was FINALLY able to SWEAT….a lot, like I was making up for lost time. I loved the product so much that I wanted to purchase it in bulk so I called the company. They informed me that through F.I.R.S.T. I could buy it at half price. This was in 1993, before the internet, and I hadn’t really heard of F.I.R.S.T. except from an article in a magazine from the 80’s. I became a member, but it wasn’t until I was 30 years old that I attended my first conference in 2000.

By that time, I had gotten into a pretty good regimen to treat my skin that I still use to this day. It’s a lot of work, but it works for me. I always shower every morning, usually with SafeGuard anti-bacterial soap as I find any soap with a scent dries me out. I use a variety of different shampoos and conditioners (not all at once). After towel drying, I apply Aqua Glycolic all over. I’ve also been using Tazorac 0.1%. This is a VERY potent Vitamin A and shouldn’t be used on a daily basis. I use it when my skin starts to feel its driest as my skin goes through cycles almost every other week. Tazorac will make my skin peel all over within a week, then my skin is smooth for a week or two depending on the season, all the while using Aqua Glycolic. I’ll also take a long, warm bath every so often with Glycerin and Epson salts. I soak long enough for the skin to soften enough that I can exfoliate with my fingernails or a loofa.

When Mom and I went to the 2000 conference in Philadelphia, we didn’t know what to expect. What I got was a life defining experience that still gives me goosebumps. At check-in, I had to convince folks that I had Ichthyosis, that I belonged there. I had been leading a “normal” existence at Disney for so long, I didn’t realize how much my skin had changed. No one in Orlando noticed I was different, because I didn’t look different. Luckily I brought my school photos to Philly. I was then taken into the large conference room where everyone was gathering. I saw kids that looked like me when I was little and was immediately introduced to their parents to hear my “success” story. People were coming up and asking to touch my skin to feel how smooth it was, and I was touching the little kids’ arms to see how I used to feel. It was a weekend filled with flashbacks. I was able to step outside myself and see how I must have appeared to others long ago. Some parents cried upon meeting me. One grandmother told me that seeing me was as if “God had sent an angel to tell them everything would be OK.” It was then I realized what Mom meant by God having a purpose for my “suffering”. All of those years of ridicule, all those trials and errors, every morning of getting ready to face the world…it was totally worth it to be there at that moment to give kids and parents hope. They may not have the success I have had with my daily regimen (although some have), but they can at least know that there is a possibility of improvement with time and perseverance.

It’s taken me a while to realize people aren’t staring at me for my dry skin. On a couple occasions I’ve had someone who doesn’t know my background look at my face and in mid-sentence say, “WOW, your skin is FLAWLESS”. I laugh a little to myself. I picture myself as a little girl relishing to hear someone tell me that then.

It’s nice to get compliments, but it’s also surreal. I mean where do I fit in? When the doors are closed and no one is around, reality sets in. I see the flakes in the bed, I sit on the floor and spend a half hour peeling problem areas. I can’t be spontaneous and go to a pool party or the beach with friends if I’m during my “molting” period. I need a good two weeks’ notice before planning what dress I will wear to an event. I still get itchy. I will get the, “Oh honey, you should’ve worn sunscreen” comment every once in a while, or, “I wondered why your hands looked so dry, do you have Eczema? My cousin has that and treats it with this…”.

And it’s not like I’m the poster child for Ichthyosis anymore. No one will fund research to find a cure if your skin appears normal.

I guess I’m fortunate though. I’ve kinda lived both sides and I’ve learned from each. I’m not perfect. I’m definitely different. And I’m grateful for my experiences and the people I’ve met, and the ones who love me for me."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

3 comments:

Merritt is a ROCKSTAR!! I've known her for almost a year and work with her every day. She's an incredibly giving person. I was just telling her about how much disdain I have for social media when used for "bragging rights", but when it's used int he service of others (like this blog), it can make all the difference. Kudos to Merritt and Carly for bring awareness to this issue!

Merritt is an inspiration and a ray of hope! Thank-you for sharing her amazing story. We haven't tried the Aqua Glycol lotion. Time to contact FIRST to see if they still have an arrangement with the company.

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The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.